Chemo Days 3-7 have passed, Sunday to Thursday, fairly uneventfully, except for a painful lumbar procedure on Wednesday in exactly the same, bruised spot as two days before. I haven't been sick (they give me anti-sickness tablets well in advance) and so far the side effects from the R-CODOX part have not been bad. Just getting used to the routine, to the lovely staff most of whom I now know by name.
Home seems a distant memory but becomes a reality again as soon as someone posts something on Facebook. For instance, David Robinson cut our grass and posted a pic of the result, and he has sent me pics and videos of Rosie playing in their garden. Keeping in touch with reality is important, more important as the days and weeks go by.
The food
It's a bit like a comfortable house arrest here. The food isn't too bad, although I am getting the measure of which meals fare better on the long distance route from kitchen to me. I don't order anything crusty, it's unlikely to be anything other than soggy once it arrives. So hotpots, cottage pie, chicken sweet & sour etc all good, but 'crispy' potatoes taste like mash.
Taste is another thing that is starting to be affected – I know I'm expecting it to happen so I am probably talking myself into it but I seem to have to sprinkle salt and pepper liberally to get any flavour.
Wee-ing for Britain
Sunday I started to wee for Britain and Monday wasn't much better; night times are difficult anyway with steroids to keep me awake, and the constant wees are a bit of a nuisance. But it's all part of the 'flushing out' procedure to get rid of the toxins and tumours that the chemo has attacked and needs to get rid of. I understand the kidneys can get blocked quite quickly with all the debris so it's important to keep it flushed through.
A Word for our Sponsors
All in all I won't have anyone knocking the NHS when it comes to this kind of treatment. 24 years ago Sally and I witnessed a similar, quietly efficient example of care when Lizzie, Zoe and Tom were launched on an unsuspecting world and the NHS cared for three little three red, squealing scraps like they were gold dust. There may be woeful lacks of communication, little in the way of 5-star comfort, and an acute staff shortage on occasions but all in all this bunch are fantastic.
I have got to know the senior guy on his rounds, Dr Davies, and his entourage of junior docs and students; the D3 ward nursing staff who are superb and who go out of their way to be cheerful in the face of adversity; even the cleaning staff bounce in with a smile.
Wifi
The big downside to being here is the lack of wifi as standard. I can see at least eight nearby hospital/uni routers, none of which I can access. Calum McDonald Wood, Annie Bishop, Judy Chatwin have all championed for me to have access but to no avail thus far. So Annie suggested directly contacting the CEO of the hospital trust, Fiona Dalton and explain my situation – that without wifi for a 12 week stay is unreasonable and unfair. Within 12 hours I had a truly sympathetic reply and twelve hours after that I can at last dispense with my 3G dongle and get some speed on the connection, making updating of blogs with pics possible and allowing me to set up a Virgin Giving Page for Lymphoma Association as promised and as people have been requesting.
It's a shame, though that others are not so fortunate or unable to apply a little pressure. The nurses cannot understand why they have raised money for a ward router but are not allowed to pursue it!
Perhaps if some NHS managers and those involved in the ridiculous contract with Hospedia (or even Hospedia themselves) tried their own clunky old system out by sending a few nights in a hospital bed, things might improve.
A Totally Horrible Night
All going well then - until last night (Thursday 23rd) - Nick Symes came in earlier, then Sally and her father (it was his birthday) and finally Guy Nicholson, an old employee of mine and good friend (who has suffered from cancer himself) brought in a splendid art book for me to doodle in and we chatted about old times.
For the first time for a few nights I was unshackled from Horace/Sally, no steroids to keep me awake, so I watched Sherlock Holmes on DVD - or at least I watched half of it before nodding off so gave in gracefully at 10.30 or so to try and get to sleep. Sleep I did, until in the small hours around 1am came a light tap on the door with a "David, I really hate to do this to you but we need your room for an emergency". I thought I was dreaming at first but no, it was for real - so we set about packing up all my wordly goods in carrier bags, taking Get Well Cards and my family pic off the wall, gathering all my washbag, clothing and literally everything I came in with. Perched on my bed, with numerous bags and feeling like hell, I was wheeled out of my cocoon and down a floor to what, in comparison, felt like a morgue. Stuck in a corner to fend for myself with five other snoring, bleeping, groaning, coughing men and their Horaces, I made the best of a bad job, shoved the bags under the bed and watched the hours click by until 7pm.
I felt abandoned and incredibly lonely; I haven't felt quite like that since being chucked into boarding school at the age of 10, or spending one night in Winchester Hospital children's ward with suspect appendicitis at the age of seven.
I managed to preserve my dignity, used the shower and toilet facilities (the loo was blocked which was lovely) and was determined to have a word with someone.
That someone came in the form of the Ward Manager – then a Matron – then the docs on their rounds who between them couldn't have been more apologetic. I was told my treatment is going well, what's happening next and that I would be back on D3 today – albeit on a open ward – and allowed home for a 24 house respite tomorrow (Saturday) before the really intensive chemo stuff starts again Sunday night/Monday morning.
This was music to my ears and when Sally came to see me at 10.30 I was so emotional. I never thought that the idea of spending a night in my own bed could be so exciting.
So back on Ward D3 by 1pm and lots of visitors this afternoon. Tried to update the blog a couple of times but was interrupted by various things including a trip down two floors to Ultrasound for a scan to check my kidneys are working. It really only took all of ten minutes but the whole thing cost an hour and a half by the time the porters eventually came to retrieve me. It being Friday everyone seemed to be pushing off home and I had visions of being abandoned there until Monday when they come back in.
Despite being on an open ward, and a lot of the guys here are very immobile or poorly, the atmosphere is good and friendly and I'm pleased to be back.
 |
| Look what the've done to Sally the Drip Pump! |
And then, tucked away in the corner of the ward, I finally saw what the hostages had done to Sally the Drip. Thankfully she looks unharmed and was even retrieved to go back into service.
One final reminder – my Virgin Giving page for Lymphoma Association can be found here. Can you spare a tenner for this very worthy cause? It looks like at last count tonight we are up to a staggering £1,880 including Gift Aid. WOW. Keep it coming, guys.
No comments:
Post a Comment